Prosper Abusah
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As a heavily immunocompromised person , I still take a lot of precautions . I wear mask when I leave my house . I don’t go to social gatherings . My decision to go to places is made on the basis of not many new cases of covid in the community is reported . When the numbers are very high I take strict precautions .
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Thanks for letting us know . Good luck with the treatment .
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Hi Jim ,
Sorry about your wife’s deteriorating MG symptoms .I also experienced rapid increase in severe symptoms . I went from slurred speech and double vision to difficulty in swallowing in a matter of days to difficulty in breathing in a few weeks . I was admitted into the ICU . It was there that I had my first head dropped syndrome . My head fell onto my chest and I could not breathe . The nurses had to lift up my head before I could breathe . Such rapid deterioration is a sign that the treatment is not adequate or effective . I had plasmapheresis and prednisolone and other immunosuppressant medications . Gradually my neck muscles became stronger and I tried neck bracelets but did not find them particularly helpful . Effective treatment of the MG was the solution .
Now my neck muscles are very strong . My Neurologist finds it difficult to push my head forward or backwards . -
I have MG for more than 25 years . I have severe muscle spasms of my hands and fingers and muscle cramps . I have been taking small doses of magnesium for years without much improvement in the spasms . Since last year I have been taking mega doses of magnesium and the muscle spasms have stopped . I have not noticed any deterioration in my MG symptoms . The list of medications and things mentioned to avoid when you have MG is endless .
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As vaccines are not effective in immunocompromised people , we cannot start taking risks because we are fully vaccinated and have two booster doses . The risk is simply too great .
Our only hope for ” normal ” life is when they find an effective treatment for covid 19 .
Life is too precious to take risk on . It is very frustrating but it is better we have a frustrating life than the other option . Let us keep up the hope . -
I have MG for more than 25 years . I have had thymectomy and different types immunosuppressants . I had IVIG once a month .Now I take prednisolone 10mg on alternate days . I also take methotrexate 25mg once a week and folic acid 5mg once a week . I take mestinon 60mg 4 times a day . I was having severe spasms of my hands and fingers . My blood magnesium level was normal but I was taking small doses of magnesium for the spasms . The effect was very little . Last year , I started taking mega dose of magnesium more than 300mg daily . Since then , I have not had any spasms .
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Yes , mestinon causes cramps in the stomach . One solution is to take it after food . If possible , reduce the dose . I was on a higher dose before . Now I take 60mg four times in 24 hours .